Once again, I’ve waited far too long to write and give updates. Now I’m overwhelmed with what to write. So much to share… I’ll just start and see where it takes me.
This was a great summer for me, yet I still have so much I wanted to do but didn’t get to for one reason or another. I felt great for most of the summer. Of course there’s always the off week here or there, but overall I had a really nice summer. I felt mostly healthy for much longer than I normally expect to. I tried to fill our time with fun family activities and just being active overall. I did the best I could to take advantage of my short time of being normal. I loved it!! I got too comfortable though. I forgot what sick felt like. I forgot how debilitating it is. It was amazing!
In October, we finally had our first family vacation since before Covid. It was a 10 day marathon to Universal Studios and Disneyworld in Florida. Everyday we were in the parks from early till late. It was fun, but too much for all of us. My husband learned a valuable lesson about human limits. He scheduled as much as possible to maximize our time. He didn’t realize how hard it would be for everyone to keep up with this schedule. He had the best intentions. His Apple watch tracked us at about 10 miles per day (averaged), which added up to a grand total of 91.7 miles in the 10 days. I’m sure you’re wondering how I walked that much… I didn’t! I had my scooter (ECV) which absolutely made this whole thing possible. My mileage walked was less than 2 miles each day. Also, in the days leading up to the trip, I started a flare. I guess the stress and preparation did it to me. I brought some old Prednisone to take but it was well past the expiration date so it did not work. I took 30mgs for the first 6 days with almost no effect. I was so sick during this time! I could barely walk and I constantly felt like I was going to pass out. I felt weak, nauseous, achy, and just miserable and exhausted. I felt so awful but I tried to hide it as to not ruin anyone’s fun. I politely declined going on rides and just rolled around on my scooter trying my hardest to get through each day. I finally called my Rheumatologist and asked her to send me a new script to a local pharmacy that delivers to Disney resorts. It took 2 days for her to get it done, but I did get the new Prednisone with 3 days left of my trip. I was thankful for those 3 days of feeling better. I still didn’t walk much, but at least I didn’t feel like I had the flu while in the parks for 8-10 hours.
I made a pretty significant discovery about myself while in Florida. I’ve always known I can’t handle being too hot or cold. My body does not regulate itself like it should. I like to say that my internal thermostat is broken. LOL. Most days in the parks was fairly pleasant. A few days were too hot though. It was over 90 degrees and I struggled to stay cool. I stayed in the shade and had a UV umbrella, but I almost passed out a few times. I felt nauseous, dizzy, weak, short of breath, and my skin felt like it was burning. I noticed that I did not have a single drop of moisture anywhere on my body. I was not sweating! I was overheating and not sweating. As soon as I realized this, I sprayed myself with water and put cold rags on my neck. Within minutes I felt better. I had just realized that in all the years of feeling sick from the heat, it was because I don’t sweat. What a discovery!! I do sweat at times, just not when I’m hot. When I’m anxious or very nervous about something, I sweat profusely. For example, if I have a new doctor’s appointment I sweat so bad that I have to change my clothes. I’ve done this while out in the dead of winter and it is not comfortable. I also sweat in my sleep sometimes. My nervous system seems to be very confused.
Less than a week after we returned from vacation, we had our Halloween party, which was great! It was a lot of fun and a huge success. I’m glad its over though. I’m exhausted and tired of planning things… for the moment. I love a good party, but I need some down time to recover. Somehow I still have things to do almost everyday. Between doctors appointments, school activities, errands, and whatever else pops up, I’m always busy. I’m lucky if I have a day off during the week to just stay home and rest. I do like having things to do, as long as I’m not feeling too bad. It gives me a reason to get dressed in something other than sweats and put on some makeup. It gives me a sense of structure and purpose. I just can’t keep up the pace that I’m at right now. Right now I’m still mostly functional, so I’ll just try to enjoy it.
I can feel myself slowing down. Today is the first day of no prednisone after tapering for almost a month. I’m definitely feeling it. I’m disappointed by how I feel. I forgot how bad it feels to be sick. I was so enjoying the pace I was keeping all summer and during the vacation. I loved being functional and feeling well. I’m afraid of what’s to come in the next few days and weeks. I always dread coming off of prednisone because I end up flaring shortly after. I just hope its not too bad this time around. I’m trying my absolute hardest to will myself to be well. I’m trying so hard to keep a positive mindset and talk myself out of acknowledging feeling sick. I’m trying to stay distracted and ignore what my body is screaming at me. I’m trying to just push through and be normal. I don’t know how long I can keep it up. It’s a losing battle but I’m still trying my hardest. I like feeling “normal” and I don’t want to go back to being the “sick person”.
My newest symptom right now is vertigo. I keep getting sudden dizzy spells followed by nausea. I get motion sickness from seeing too much movement around me. I’m getting sensory overload, causing me motion sickness. It’s so strange and very frustrating. I’ve also had a daily headache for a few weeks now. I’m gonna assume it’s from the prednisone, so hopefully that improves over the next few days.
I think that’s all the important stuff for now. Until next time… ❤️
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